What do you do when you find out that your child is dying?

I have spent the past year waiting for my daughter to die.

 

Your child is dying

Findings and opinions were many.

One in billions genetic mutation. 

Only three known cases in the world. 

She’ll be dead by fifteen months.

Enjoy your time together.

That was the initial prescription – enjoy your time together.

Everything had been fine.  I was living the dream.  Beautiful little girl, loving family, fulfilling job.

It is really shocking how abruptly you can lose everything. Or, think you have

Anakha had been fine.  There were no alarm bells.  She was a typical happy little nine-month-old.

Then, one day, she stopped crawling.

She’s just tired. It’s the heat.

You’re crazy Mama!  She’s fine!

Over the next four weeks, she lost independent sitting, rolling, grasping, and finally neck control.  She stopped babbling.  At ten months, she had the motor functions of a two-month-old. An MRI showed progressive cavitating leukoencephalopathy, which means there are holes in the white matter of Anakha’s brain, which controls all motor functions, or movement.  The doctors hinted at a “mitochondrial disease”, but would not provide further information without a diagnosis.

At thirteen months, the official diagnosis came. Multiple Mitochondrial Dysfunction Syndrome – Type 3.   A rare genetic condition. Only three cases reported in the literature. The doctors told me that she will only get worse, that next to go would be the ability to chew and swallow safely.  She would need a feeding tube.  Then a breathing tube.  And by around fifteen months old, she will be gone.

Anakha was written off.

So what do you do when you find out that your child is dying?

I will be honest.  At first, you cry and scream. You grieve.  You mourn.  Your hopes and dreams, your future is shattered.

Allow yourself enough to feel the pain.  You will carry the horror of that moment for the rest of your life. And when you emerge, you will have become the strongest version of yourself there is.

You will do everything for your child.  Anything for your child. You will push yourself to extremes unknown. You will tirelessly advocate for the needs of your child.

Mothers of children with special needs, imminently terminal or not, are the toughest people I have ever met.  I am proud to count myself amongst them.  If you need to get something done, call a mother of a child with special needs.

We are warriors.

You learn how precious time is.  Every moment must count.  No wastage. You weed out everything superfluous in your life. What used to be major calamities to you are now laughable.  Oddly enough, you ease up and develop a very dark sense of humour. You learn to live with the grief. It is always there and catches you in unexpected moments.

One of my Achilles is while driving alone, glancing into the rear-view mirror, and seeing that She. Is. Not. There.

It reminds me that one day she really won’t be there, permanently.

You become financially instable.  Medical bankruptcy is real.  You find creative alternatives for employment, just to survive.  I started my own legal practice, something I never thought I could do, as it gives me the flexibility to be home with Anakha and still engage in meaningful employment. It’s going well.

People you expected to lean on in a crisis either step up hugely or cannot handle it and fade away.  You are hurt at first, but then move on, because they do not matter anymore. And people you never expected to care become your rock.

So what did I specifically do for Anakha?

I did not listen to the doctors.  I would not write her off. I could not give up.

It is astounding how common Anakha’s story is, of children being written off, only to defy the odds.  She should be an outlier, but I have heard the same story repeatedly from other families.

As soon as I heard “mitochondrial disease”, or as we call it, “mito”, my science background kicked in.  I researched, advocated for medications and services, contacted doctors and researchers around the world who study her specific condition and gene.

Anakha is now twenty-seven months old.  She has regained head control, grasping, rolling, independent sitting for short periods of time, and weight bearing.  Her vision has improved. She gets around in a homemade wheelchair, made by my crafty mom. She can speak in short sentences and understands everything.

And her favourite words? “I did it!”

As a caveat, hope, love, prayer, belief and hard work do not mean your child will survive.  But it will give them a chance after everyone else has given up.

Anakha is surrounded by a supportive group of doctors, therapists and family who believe in her, and her potential.

Now, instead of waiting for my daughter to die, I live and laugh and enjoy our life together.

We live.


Savitha Thampi - Reboot SocialAUTHOR: SAVITHA THAMPI


Savitha is a corporate/commercial lawyer, with a specialty in intellectual property and media law. She is proud to advocate for the rights of children with special needs. Her current focus is finding education opportunities for medically fragile children. Savitha can be reached at savitha.thampi@gmail.com.

28 comments for “What do you do when you find out that your child is dying?

  1. February 19, 2017 at 10:29 AM

    All our prayers and support always with you . Love you Valle

  2. Ajith Kalliat Thazhath
    February 9, 2017 at 4:22 PM

    Hello Savitha,
    Thanks for sharing this heart touching article. We admire your courage, perseverance and ability to think clear during difficult times. Our best wishes and prayers are always there for Anakha.

    • Savitha
      February 10, 2017 at 11:32 AM

      Thank you Chetah.

  3. February 7, 2017 at 7:57 PM

    Savi whatever you are doing now is the right thing . Our support love and prayers are always with three of you.love you Valle

    • Savitha
      February 8, 2017 at 11:00 AM

      Thank you Valle!

  4. Jennifer
    February 7, 2017 at 4:52 PM

    Savitha, your daughter Anakha is very sweet and lovely and you are a courageous, determined and strong woman! Thank you for being so generous and inspiring by sharing your story.

    Sending positive thoughts your way.

    Jennifer

    • Savitha
      February 8, 2017 at 11:00 AM

      Thank you Jennifer. So nice to hear from you.

  5. Heather
    February 7, 2017 at 8:58 AM

    Oh my goodness. That was such a beautifully written piece. What a gorgeous little girl she is. And you are a strong mommy… with a strong mommy. I am truly inspired and in awe of your family.

    xoxoxox

    Heather

    • Savitha
      February 7, 2017 at 2:17 PM

      Thank you Heather!

  6. Cassaree
    February 6, 2017 at 9:52 PM

    Bless you and your precious baby! Never give up!!

    • Savitha
      February 6, 2017 at 10:56 PM

      Thank you very much.

  7. Gregory Potter
    February 6, 2017 at 10:40 AM

    Dear Savitha,
    Thank you so much for sharing . I really admire your devotion and strength, and I’m sure that this story will help many others. It puts life and what’s really important into perspective for me. You, Ajay and Anakha are in our thoughts.
    Keep defying the odds and Live on!

  8. Roanie
    February 6, 2017 at 7:25 AM

    Thank you Savitha for sharing your story and the story of your beautiful and determined daughter.

    • Savitha
      February 6, 2017 at 12:00 PM

      Thank you Roanie.

  9. Victoria
    February 5, 2017 at 8:38 PM

    Dear Savitha – I truly believe that your fierce, unwavering love for Anakha has made miracles possible. And your struggle is a remarkable example of selfless motherly love. Others will no doubt gain strength and comfort from Anakha’s story.

    • Savitha
      February 5, 2017 at 9:31 PM

      Thank you Victoria 🙂

  10. James Varghese
    February 5, 2017 at 1:31 PM

    Wow Savitha, thank you for sharing your story. Your courage and Anakha’s determination are nothing short of inspiring and encouraging to so many people faced with life challenging battles. As a father of an 18 month old son, I thought about what you said, of looking into the rearview mirror and not finding your child there. It certainly tugged on some heart strings. If there is anything I can do to help or even share your story, I’d be more than happy to. God bless you and Anakha and both of your journeys.

    • Savitha
      February 5, 2017 at 1:51 PM

      Thank you James 🙂 For sure, please feel free to share.

  11. Geetha Thampi (the mom)
    February 5, 2017 at 12:48 PM

    You are right about the mothers of children with special needs being warriors. I know because I work with their children who themselves are quiet feisty and positive. Someone once told me that God created these mothers as angels to fight some of his battles for him. So fight on my warrior angel, I am right by your side.

  12. Anil Gopakumar
    February 5, 2017 at 1:57 AM

    Savi,
    This spoke to my heart. To fathers like me who get worried about their kids for the smallest of things, you are an inspiration. Can understand every emotion that you described, difficult to even comprehend how you faced all of them . Feel proud the way you have gathered life back and living it strong. God bless Anakha and the family.

  13. Gayathri Menon
    February 5, 2017 at 12:04 AM

    Savi,
    I read your post with mixed feelings. What I learnt from it is not to complain about small things in life. I am sure you Ajay Geechi and Anakha as a team would do wonders. All the best!

    • Savitha
      February 5, 2017 at 9:01 AM

      We are a great team! 3:1 ratio 🙂

  14. February 4, 2017 at 7:46 PM

    Hi dear! You were the first Mito parent to reach out to me when my daughter was diagnosed and I will never forget that. You shared the most valuable information on everyday care and how to research that I believe is the foundation to where we are, I am so grateful. All of the emotions you described are exactly what we have experienced. I hate the haunting nightmares or sad thoughts that just appear out of nowhere and almost always involve my child being dead, those are the absolute worst. We as your family try to live everyday to the fullest and not focus on the negativity. I started a blog soon after my daughter was diagnosed to share our moments as a family and keep all of our friends and family that live far away updated. I would love to share your story. I have not yet written the processs of diagnosis for us, it is extremely painful but I will before the one year anniversary. You can follow along at http://www.lifeisradd.com

    • Savitha
      February 5, 2017 at 9:04 AM

      I will definitly check out your blog. Us Mito Moms support each other!

  15. Sumaiya
    February 4, 2017 at 6:12 PM

    You ARE a warrior. I am in awe of how you fought for Anaka. Fought her doctors, fought your grief… And I’m so grateful that you have found a way to be home. You continue to be in my prayers.

    • Savitha
      February 4, 2017 at 7:33 PM

      Thank you Sumaiya 🙂

  16. February 4, 2017 at 12:45 PM

    Savitha,

    Good to see that you are still able to maintain perspective and a certain sense of realism. I wish you luck with your new law practice….

    • Savitha
      February 4, 2017 at 7:32 PM

      Thank you!

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